Community Living
As you plan for the transition to adulthood, it is important to remember that integration into the community is a key component of happiness and independence in the lives of autistic adults. You may want to think early on about introducing your child to members of the community. As your child grows older, their educators and you may need to become creative in your efforts to create opportunities for social interactions.
Whether your child has contact with the bagger at the grocery store or the crossing guard outside their school, these regular interactions are the foundation for being part of the community. This is just the beginning. Community ties can be developed at different times on different levels.
There is truly something for everyone. It may just take a bit more effort to find what your young autistic adult is looking for and what social opportunities will provide them with the greatest amount of happiness.
Picking the Right Activities
There are a number of programs available that vary from athletic to creative, one-on one instruction to full inclusion, recreational to competitive. Some things you may want to think about:
What are your child’s likes and dislikes?
What makes your child tick or motivates them?
What are your goals for your child with this activity? (e.g. to socialize,
learn how to play, develop a hobby, strengthen an existing skill, etc.)
What are your child’s challenges?
Does your child have behavior problems that may prevent them from
participating in certain activities?
Does your child need a one-on-one aide to participate?
Answering these question will help you and your child decide on which activities will make them the happiest and which will help most with integration into the community.
Community Activities
There are many opportunities for individuals with autism in most communities. These may include:
Public/private facilities: pools, parks, YMCAs, fitness clubs, programs at local universities
Exercise and sports
Hobbies, games, arts and crafts Social events
Youth groups or religious community activities
Special Olympics
Title II of the American with Disabilities Act (ADA) prohibits discrimination against individuals with disabilities by any state or local government agency. An additional source of activities can be found by contacting local government agencies, such as the parks and recreation department in your city.
Prepare your child for participation in these activities with social stories, schedules, behaviors to expect, etc. In some cases, it may be helpful to have an aide who knows your child to go with them to the activity sessions in order to help facilitate successful participation. In addition, before you register for an activity, it is important that you speak to the activity leader about your child’s positive attributes, as well as their challenges. If necessary, ask if you can bring them on a trial basis and arrange the most practical time.
Travel Training
Transportation is an important part of enabling your child to integrate into the community. In order to be more independent and have greater access to the community, travel training is very important. Travel training should begin at an early age to get your child as prepared as early as possible for community life.
Be aware that travel training is available to your child and can be part of their transition IEP. In addition, your state office of vocational rehabilitation can help with training your child to travel to work. Postsecondary programs often have a travel curriculum as well.
Travel training is a proactive tool that will play a big role in establishing more independence for your child. Some individuals with autism may be quite savvy about reading maps, but they may have no idea how to ask how much a ticket costs. Others might know everything about trains but have trouble with the hustle and bustle of a train or subway station.
For many travel training programs, there is a pre-requisite skill of being able to cross the street safely. Your child may be a pro at riding the train, but often a skill that seems as basic as crossing the street can be difficult, especially for those with autism who struggle with understanding danger. Make sure you teach your child this skill as early as possible. Knowing they have mastered this skill will make you feel more at ease when your child is out in the community.
A comprehensive approach to training is helpful because there are most often many components involved when traveling from one place to another. It is important to think about all of these factors that go into taking public transportation. Teach your child what to do in an emergency in all travel-related settings. Let them know what to do when lost or confused. Be sure to teach your child that there are often delays in public transportation systems and that traffic might affect the time it takes to get somewhere.
You may want to start small, like a weekly trip to the train station and slowly build up to riding the train to a desired destination. The earlier you can start with these small steps the easier it will be for your child to navigate life in the community as they enter adulthood.
Safety
Safety is a very real concern for all parents, but especially parents of children and adolescents with autism. Your child may be seeking more independence and as a parent, you want to foster this growth. But you may also be concerned about the risks associated with being out in the world. It is important that safety is taught to adolescents with autism as part of the skills that they will need to enhance their independence.
Some basic skills to consider include the ability to:
Identify strangers
Identify community members who can offer assistance
Ask for help
Know what to do if lost
Communicate name, address, phone number and emergency contact person – either verbally or with a card
Use a cell phone, to both call and text
Identify public versus private spaces
Navigate your neighborhood, downtown and surrounding area safely
Wandering
Studies have shown that 49% of autistic children with autism are prone to wandering from safety. And unfortunately, many do not grow out of this tendency as they enter adulthood. Teaching the skills necessary to prevent wandering incidents at a young age will help to ensure your child’s safety once they are out in the community.
If your child has a tendency to wander, it is critical to address this issue in their IEP. Be sure to carefully document all wandering-related incidents so you can identify the triggers and eliminate them as much as possible. You can also practice safety skills out in the community and teach your child what to do if they get lost.
The leading cause of death among autistic people is drowning. And this puts children who wander at risk. It is important that your child not only knows how to swim but understands the importance of water safety.
Autism Speaks provides grants to swim programs to award scholarships for swimming and water safety lessons for financially disadvantaged individuals with autism. Learn more at autismspeaks.org/autism-grants-service-providers.
There are also many safety products available that can help prevent wandering and respond to wandering incidents. These include locating devices, which you can use to make sure you can locate your child if they are missing. There are a number of these devices available with a wide variety of features.
Many people with autism carry ID cards to show first responders or members of the community to let them know about their autism diagnosis and may include contact information as well. You can also share this information with neighbors and other members of your community so they can keep an eye out for your child and help them home if they wander from safety. Find these and other safety products on the Autism Speaks website at autismspeaks.org/safety-products-and-services.
Interacting with First Responders
Another important skill to teach people with autism to help maintain their safety in the community is how to interact with first responders. It is estimated that children and adults with autism are seven times more likely to have interactions with first responders than their typical peers. To make sure these interactions are safe and effective, it is critical to teach your child about first responders, and if possible, to teach your local first responders about your child and others with autism.
It is important that your child knows how to identify first responders and understands that these men and women are there to keep the community safe and that your child feels comfortable approaching them if they are in need. It might help to bring your child down to the local police station to introduce them to the officers there so that if they meet when there is a safety issue in the community, both parties will be able to reach a safe and effective solution as soon as possible.
Providing first responders with key information before an incident occurs could improve the response. You may want to develop informational handouts that contain all pertinent information to circulate to first responders, as well as family, neighbors, friends and co-workers. Information could include your child’s challenges, other medical conditions, the most effective ways to communicate with them, favorite attractions where they might be found and more. Autism Speaks offers a wide variety of resources for both families and first responders. Find them at autismspeaks.org/safety
Preventing Abuse
Individuals with disabilities are more likely to be victims of abuse than their typical peers. Many abuse cases are never reported because the individual may not be aware that another’s actions are constituting abuse, may not be able to communicate the abuse to their parents or may feel ashamed and not want to share the information. It is important to teach individuals with autism from an early age what is appropriate versus inappropriate treatment by others so they can identify when they are being abused in any way - emotionally, physically, sexually, etc. Make sure your child understands that abuse comes in many forms and can identify the red flags and feel comfortable telling you if they believe that they might be a victim of abuse.
An important factor in preventing sexual abuse is teaching your child about sexuality and the difference between public and private places and between “okay” and “not okay” touches. While many children learn about sexuality through movies, magazines or gossip at school, children with autism often need to be taught more explicitly about issues related to sex and puberty. Teach your child about boundaries and personal safety and make sure they feel empowered to make decisions about their own body. It is important that your child understands that saying “no” is okay when they feel scared or threatened by someone else.
Educate yourself on how to identify warning signs and how to report it if you suspect abuse or neglect. It is important to trust your instincts. If you have a suspicious or uneasy feeling about the way your child is being treated in the community, speak up. Encourage your child to share their feelings with you and keep the lines of communication constantly open so they can more easily report if something is wrong. Learn more about sexuality education in the Health section of this tool kit.
Shockingly, research suggests that 97 to 99 percent of abusers are known and trusted by the victim (a family member, staffer, respite care provider, etc.). Make sure you evaluate the relationships your child has with the people in their life and be on the lookout for warning signs. When teaching your child about boundaries, make sure you emphasize how there are different boundaries for different people – for example, your sister can hug you but an aide at your school should not; only Mom, Dad and Dr. Smith are allowed to see your private parts.
As with so many other topics in this kit, self-advocacy skills play a role in preventing your child from becoming a victim. If they are able to speak up or express their feelings in the best way possible when an uncomfortable situation arises, your child will be
less vulnerable to abuse. Start teaching your child as early as possible about the dangers of abuse and helping them build the skills necessary to keep it from happening. Learn more at autismspeaks.org/recognizing-and-preventing-abuse
Conclusion
It is essential to keep in mind that community integration is a big part of life for all people and that your child with autism is no different. It may seem like a distant thought, but it is important to teach your child at a young age about the skills they will need to
become a part of their community as an adolescent and adult. Lessons like social skills, travel training, safety precautions and abuse prevention education can start small and build gradually over time. These skills take time to learn so keep in mind that patience
is key. The better prepared that your child is, the more likely it is that they will thrive as a member of their community.